We Are Chronic Pain: The Untold Stories Of Those In Pain

We Are Chronic Pain: The Untold Stories Of Those In Pain

As the U.S. continues to struggle with issues in equity for people of all races, it’s no surprise that there are similar inequalities in terms of health. Anyone who suffers from chronic pain deserves the same compassion and treatment options that all other patients receive. We’ve talked before about some of the inequalities in care among genders; this post covers those who are being underserved by the larger medical community. By shining a light on these stories, we hope to show how comprehensive and compassionate chronic pain treatment should be extended to all patients.

Chronic pain in the African American community

African Americans experience unique health challenges. These may be a result of a combination of factors that include lower socioeconomic status, geographic distribution of the population, underlying prejudices, and access to quality healthcare resources.

According to the Department of Health and Human Services fact sheet for African Americans, some of these challenges include:

The highest mortality rate of any racial and ethnic group for cancer generally and for most major cancers individually, including stomach, liver, prostate, and colon cancers

A 40% higher chance of death due to breast cancer even though the rate of breast cancer for African American women is 10% lower than non-Hispanic whites

Uncontrolled high blood pressure at an 18% higher rate than non-Hispanic whites and a 40% increased incidence of high blood pressure in general

An infant mortality rate that is 2.3 times the rate for non-Hispanic whites, with African American infants dying of low birthweight-related issues at four times the rate of white infants

A crucial part of healthcare is insurance that provides access to preventative care, and African Americans are 55% more likely to be uninsured than non-Hispanic white Americans. This low rate of insurance contributes to higher rates of mortality and more serious illness in African American populations. The rates of insurance vary widely across geographic regions, with African Americans less likely to have health insurance in the south than anywhere else in the country. This gap was closing between 2013 and 2016, with 18% uninsured in 2013 and 11% in 2016, but recent policy legal updates may change that.

Quality of care

In two studies that examined a doctor’s unconscious bias, researchers found that doctors who demonstrated bias in a task were providing care that was rated much lower among their African American patients. This was supported by research that indicated higher death rates for lung cancer were present in highly segregated counties in Colorado, even when controlling for income and smoking prevalence.

Awori J. Hayanga, MD, MPH, the study’s lead author, believes that it is not just unequal access that is the issue, and adding more doctors or providing more insurance won’t necessarily fix the problem. Hayanga notes:

“It is the lack of access, the deprivation, but also the intangible sociocultural aspects of it. One, you may not have the screening services. Two, if you do have screening services, do you have the specialists to see? Will the population dealing with this trust the system enough to go or is there a cultural barrier that stops them from going to that second phase of their care? It isn’t one thing — it’s a complex equation where enough things collude to make it happen.”

Different chronic pain treatment access

When it comes to chronic pain diagnosis and treatment, these barriers of access and bias exist and extend to checkups and monitoring of pain treatment plans, especially when it comes to opioid prescriptions. Lead investigator Leslie R.M. Hausmann, PhD at the Center for Health Equity Research and Promotion in the VA Pittsburgh Healthcare System and assistant professor of medicine at the University of Pittsburgh, looked at the electronic records of 1,646 white patients and 253 black patients who filled prescriptions for pain that was unrelated to cancer.

Although there were differences in some characteristics (e.g., white patients were older and more likely to be married), there was no difference in their history of substance abuse. However, researchers found that black patients were more likely to be tested for drug levels than white patients, even though pain levels were taken for black patients less frequently.

Additionally, black patients were less likely to be recommended to a pain specialist, but more likely to be referred for substance abuse assessment.

Dr. Hausmann concludes that:

“The emerging picture is that black patients who are able to overcome the barriers to securing a prescription for opioid medications may still be subjected to differential monitoring and follow-up treatment practices that could impact the effectiveness of their pain management. Addressing disparities in opioid monitoring practices may be a previously neglected route to reducing racial disparities in pain management.”

Bias in clinical trials

When it comes to developing new drugs for some of the diseases most prevalent in the African American community, bias even exists in participation in clinical trials. Researchers at H. Lee Moffitt Cancer Center & Research Institute found that whites participated in genetic clinical studies at a rate that was twice that of African Americans. In clinics and universities that were well-supported, participation rates in these studies were about equal among whites and non-whites, but at smaller institutions, representation was grossly unequal.

Howard L. McLeod, PharmD, medical director of the DeBartolo Family Personalized Medicine Institute at Moffitt, pointed out that this inequality may lead to ineffective treatments based on misrepresented genetics:

“As the field of oncology moves to biomarker-driven therapy, there is a concern that important minority groups are being inadvertently left out of the very research that will find the ‘right’ marker to guide therapy for people in their community.”

Chronic pain in the Latino community

The rapidly growing U.S. Latino population faces similar barriers to health care. Chronic pain, in particular, is undertreated in the Latino community, leaving many needlessly suffering from life-altering pain.

Barriers to care for Latino population

High poverty rates and low education levels make it difficult for Latinos to find the medical care they need, or even access health-related information. The community’s traditional cultural beliefs may often result in fear around topics like cancer, leading to low rates of screening for certain diseases.

Like white people, Latinos are most likely to die from cancer or heart disease, although cancer is the top killer among Latinos and No. 2 in whites, according to the Centers for Disease Control and Prevention (CDC).

Other causes of death are far more common in Latinos. For example, diabetes is 50% more likely to kill a Latino person than a white person. Hispanics are also 24% more likely than whites to have uncontrolled high blood pressure, 23% more likely to be obese, and 28% less likely to undergo colorectal screening for cancer.

Latinas also tend to avoid screening for breast and cervical cancer, according to the Rowell Park Cancer Institute. Researchers found that many Latinas fear a cancer diagnosis and so avoid getting screened at all. The study analyzed a group of women who participated in a cancer education program, but found many of the women dropped out.

Bias in clinical trials

The Latino community is also underrepresented in clinical trials, potentially impacting treatment outcomes.

Research from the H. Lee Moffitt Cancer Center and Research Institute found that clinical drug trials contain a research bias towards white people, often leaving the Latino community woefully underrepresented.

The disparity is critical to address, researchers said, particularly because treatments for cancer—one of the biggest killers—are evolving from a one-size-fits-all approach to highly customized plans based on genetics and the specific types of tumor cells.

Earlier research from the Moffitt Cancer Center found that the disparity in trial participation stemmed from not only a language barrier, but also the cultural belief that doctors are solely responsible for developing treatment plans. Many patients believe it’s their job to follow doctor’s orders, and that doctors don’t need their help, even for clinical trials.

Researchers hope that developing culturally relevant information, such as educational materials written in Spanish, will diminish the disparity.

Language barriers and pain control

Language barriers in the Latino community further contribute to poor pain control.

Many times, when communication between the Latino community and doctors breaks down, it’s the children who suffer. A whopping 67% of low-income Latino children didn’t receive effective pain management after surgery, according to a study from the American Society of Anesthesiologists.

Again, cultural issues contributed to the issue, with the parents of those studied lacking adequate information about pain management, researchers said. The community also reported valuing herbal remedies over pills, with many fearing the child might develop an addiction to the medicine or experience adverse health effects. Study author Dr. Zeev Kain says:

“We need to find innovative solutions to address the problem and ensure that kids get adequate pain relief after surgery.”

Beliefs about chronic pain

Latino chronic pain patients are less likely to take pain medication than whites, partially because of cultural beliefs about treatment.

Minority groups in general face a greater burden when it comes to pain, according to the Journal of Research in Nursing. Latino patients in particular are less likely to receive medication, and be given lower doses for those medications they do receive.

This adds up to overall poor pain management, researchers said. Cultural issues may interfere with Latino patients asking for what they need. Values such as not causing conflict and the desire to make decisions as a family—even for personal, medical situations, are to blame.

These cultural beliefs run deep. Even during labor, Latino women are 53% less likely than white women to receive an epidural, according to research from the University of Virginia. Researchers wrote:

“It’s critical for nurses to learn that in some cultures, pain during childbirth is viewed as a necessary and natural rite of passage for which no relief is sought.”

Hispanic women believe pain is part of the process, and their culture values enduring that pain with strength. Researchers noted that white people receive far more pain relief not only during childbirth, but also in the emergency room.

Respect versus appropriate care

This raises the question of whether Latinos are really receiving poor pain management and not understanding doctors’ instructions, or whether doctors and other medical experts need to work to better understand and respond to Latino’s cultural beliefs. Labor research study author and doctoral candidate Juliane Milburn wonders:

“Is the true disparity the lack of cultural understanding by U.S. health care providers and the inability for Hispanic women to communicate their desires [despite] language and cultural differences [or] the propensity to undermine these clients’ wishes by asserting our own values?”

Researchers remain concerned about Latino’s ability to communicate their levels of pain, however. A study published in the Oncology Nursing Forum studied the poor pain management Latino cancer patients receive, and found that issues such as low-income, immigrant status, and language barriers interfered with patients’ ability to describe suffering.

Chronic pain in the Asian American community

As of 2011, there were 18.2 million Asian Americans in the United States. Asian Americans are faced with a unique set of issues in chronic pain care. The only way to combat these issues is to recognize them and come up with actionable ways to resolve or reduce the issues.

To start, the term “Asian” includes several different ethnicities. While we use it for simplicity here, it’s important to point out that Asian Americans are not a homogenous category of people. In 2011, the largest Asian American groups were Chinese, Filipino, and Asian Indian. The next most populous groups of Asians are Vietnamese, Korean, and Japanese people. However, these populations are not the only Asian groups, as noted by the Centers for Disease Control and Prevention (CDC), which defines Asian as people who have origins in “the Far East, Southeast Asia, or the Indian Subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.”

Discrimination in healthcare

Asians in the United States still suffer from discrepancies and discrimination in healthcare. Many Asian Americans live at or below the poverty line. Many may not have insurance. They may also suffer from chronic conditions. In fact, the Asian population may be disproportionately affected by HIV/AIDs, hepatitis B, tobacco use, and tuberculosis.

Asian individuals also face discrimination. According to one study, common instances of everyday discrimination against Asian Americans are associated with indicators of pain, such as:

Frequent or severe headaches

Chronic pain

Chronic back or neck problems

Ulcers

Barriers to care

Some of the pain-related discrepancies in healthcare for Asian people are culturally-related.

Researchers at the University of Missouri found that South Asians in the United States are more reluctant to seek medication therapy for pain. One possible reason for this is the mindset surrounding pain in many Asian cultures, as noted by an article from Dimensions of Culture:

“Patients from Asian cultures may often exemplify stoicism in the face of pain, which relates directly to strong cultural values about self-conduct. Behaving in a dignified manner is considered very important, and a person who is assertive or complains openly is considered to have poor social skills. This behavior might be tolerated in very small children, but not in adolescents and adults… Though an individual may feel sadness or pain, it is not customary to make this obvious.”

This stoicism concerning pain can have an effect on communication with healthcare providers. Because Asian people may be used to avoiding discussions about pain, they may be made uncomfortable by physicians’ questions concerning pain. Additionally, pain may not be described the same way in some traditional Asian cultures. While others might describe a pain experience as sharp or throbbing, an Asian individual – unaccustomed to discussions about pain – might describe that same experience in a different way.

Some religions practiced in Asian cultures also value the acceptance of pain as a demonstration of faith. If this is the case, an individual in pain may refuse pain medication because he or she believes the pain to be the will of a higher power. Pain medication may even be seen as self-indulgent.

Lastly, tools used to evaluate pain intensity commonly involve a numbered pain scale or a linear representation of faces varying from smiling to frowning. Some Asian cultures might associate certain numbers with superstitions, so a numbered pain scale may not be accurate. Smiling can have different associations in some cultures, such as embarrassment or anger, so a choice of faces varying from smiles to frowns may not be very accurate, either.

A path towards better care

Discrepancies in pain management among all groups can be lessened when healthcare professionals are aware of the problems.

Communication and trust must be the basis of pain management. Healthcare professionals, such as doctors and nurses, have to talk openly about the importance of pain management. Also, they must take all complaints of pain or discomfort seriously.

It may be helpful to devise creative methods of communicating pain intensities, too. If a patient is uncomfortable with faces or a numbered scale, his or her healthcare team should perhaps try to find another way to understand the individual’s discomfort level.

One way to improve communication and understanding between patients and professionals is to better educate healthcare professionals about cultural differences and discrepancies. Some students at the Albert Einstein College of Medicine have taken part in a three-month elective course designed to help bring attention to health disparities. The course involved role-playing and strategic planning, among other skills. At the end of the course, participants reported feeling significantly more confident about dealing well with health discrepancies.

Another way to possibly improve care is the introduction of care guides. Allina Health is introducing two equity care guides into its healthcare team. These care guides are non-clinical professionals who support patients. The care guides do not dispense advice. Rather, they focus on identifying barriers to care and solutions to these barriers. Care guides might also help patients find resources or become more educated about their own care or medications.

How do you think we can lessen discrepancies in pain management among the most vulnerable? What barriers have you faced in your path towards diagnosis and treatment?